Individuals, families and caregivers are often faced with the difficult dilemma of whether or when to place their loved one with dementia into long term care. Because dementia is a progressive disease, there may come a time when it is just too difficult to continue to provide care at home. Some caregivers are simply “burnt out.” They know their loved one doesn’t need fulltime nursing care but again, for a multitude of reasons, they just can’t carry the weight of support on their own. Regardless of why, caregivers are often left wondering whether they made the right decision at the right time. Their preference would have been to keep their loved one home longer. Many are fraught with guilt and feel as though they need to justify their decision.
In many cases where the person with dementia may still be otherwise healthy and strong, such as with early onset dementia, it becomes increasingly unsafe to leave her/him unsupervised. Adult children caring for a loved one may experience strained or fractured personal relationships. They find they are spending less time together as caregiving becomes all-consuming. Family members may have to take turns participating in family functions to ensure someone is always with their loved one with dementia. Maybe they are missing out on their own kids’ or grandkids’ memorable events because it’s just too hard to bring mom or dad due to the uncertainties that accompany a dementia diagnosis. Often the person with dementia feels isolated or burdensome. They may even be depressed because they have difficulty interacting with people or friends in the same way that they used to or because of societal barriers and stigmas about the disease. Equally as devastating are the restless and active nocturnal behaviours that many people with dementia experience. It can be frightening, threatening and unsafe and disrupt caregivers’ sleep night after night.
And yet, what options do people have? Community supports are limited and do not necessarily address the needs of those they intend to serve. Private caregivers will provide at home service but family may still have to be present. It can also be difficult to know exactly when the person with dementia may need such support as behaviours fluctuate from moment to moment. Homecare does not address the social isolation and the effects of being “housebound”. Another potentially viable option may be an adult day program, but they most often come with extensive waiting lists. Adult day programs usually have set hours of operation that may not fit with the caregivers’ schedule and are not open when needed the most, such as in the evening, during the night or on weekends.
Exasperated and exhausted, caregivers run out of options and come to a crossroad. Story upon story, caregivers describe the stress and desperation they are feeling, the shortcomings in an overextended system, the guilt they feel for not keeping their loved ones at home and the frustration with the long term care experience.
Kaleidoscope Cottage is a simple yet innovative idea that addresses the core concerns of a family living with dementia. The Cottage embodies warmth and friendship and changes the lens of how dementia is experienced. It is the missing piece, the bridge over the ever widening gap in the health care void. No referral is required…we are simply a phone call away. Ultimately, it just may be the key to keeping your loved one more active thus, more content. Caregivers will have peace of mind to do whatever they choose to do.
Our dementia “experts” (affectionately referred to as “cottage keepers”) are exceptionally qualified in understanding and practicing effective communication and behaviour strategies. We are available around-the-clock to provide respite and support for caregivers while offering an opportunity for loved ones to engage socially in a safe, inclusive atmosphere , enjoying companionship, camaraderie and contribution.
Kaleidoscope Cottage does not run organized or structured “activities”, nor is there a set schedule. There is no time clock for dementia. Instead, it offers inspiration for real purpose. “Cottagers” (cottage guests with dementia) are encouraged and supported to do the things they like to do based on their individuality and personal preferences. In a safe, supervised environment without the expectation that anything needs to be done “right”, “quickly” or even completed at all these choices may be related to the familiarity of the past or the fascination of the present moment. Kaleidoscope Cottage is filled with life that overlaps. Our mini green house, our gentle senior pets and our impromptu intergenerational visits embrace the Cottage “philosophy” that life is for living. We welcome the companionship of those who wish to offer it. Entertainment, recreation and many opportunities for spontaneity and laughter are incorporated into everyday Cottage life.
Kaleidoscope Cottage is geared to support those with dementia who do not have complex care needs. There will never be more than five “cottagers” at Kaleidoscope at any given time. This ensures the best ratio for optimum interaction and wellbeing.
A healthy person’s brain stores life experiences as memories that can be retrieved and interpreted as perceived truths. When a person has a brain disease like dementia, the wiring is impaired, so the memories are either compromised or irretrievable. The altered reality is still perceived as truth in that moment. The acceptance of this is the basis of the Kaleidoscope Cottage philosophy for understanding and connecting with persons with dementia.
Like a kaleidoscope, the dementia experience is always changing…and so are we.